Navigating the holidays with special needs kids

Nov. 27, 2013

Written by

Marla Hardee Milling,

Heather Holt is gearing up for a new experience with some of the kids with autism that she serves as director of Camp Lakey Gap in Black Mountain. She’s inviting them to represent the camp as they walk together for the first time in the Black Mountain Christmas Parade.

The camp provides a remarkable residential summer experience for the kids, but Holt is expanding her focus to find ways to give them year-round opportunities to participate in things like parades, festivals and special events.

“I think it’s important to include our friends with disabilities in events like that,” she says. “They are often forgotten in holiday events.”

Of course, parades can be overwhelming, so she’s working to make sure she can alleviate as many stress triggers as she can before the parade walk begins. She’s been careful to ask parade organizers not to position the group next to large animals, horse carriages or blaring bands. Holt is also aware that parades create unexpected issues — things like having to stop and wait, a dog getting loose, or someone blowing a shrill whistle in the crowd. She’ll pass out ear phones to muffle the loud noises for those who have sensory issues.

While she hopes many of her campers will show up to take part in the parade, she says there’s always a way out if they get overwhelmed or begin to have a melt down on the route.

“We want our parents to walk with us,” she says. “If their child becomes overwhelmed, they can step out of the parade route and sit and watch or walk to the end of the route to meet up with the group.”

Have Plan B in mind

Even if you’re not on a parade route, holiday challenges with special needs children requires parents to always have a backup plan in mind.

“We always have an escape plan for every event that involves large crowds or locations our daughter isn’t familiar with,” says Angela Roberts, of Asheville. “We also have a schedule for every day she is out of school that incorporates holiday traditions and things we know she enjoys.

“Of course,” she continues, “each year there is a new issue or circumstance to work around. We usually don’t find out what it is until it happens. We parents of special kiddos are always on guard.”

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Roberts says one year her daughter became freaked out because she didn’t want a stranger (Santa) entering the house through the chimney. They reassured her by saying they would leave the back door unlocked for him with a note asking him to lock he back when he departed.

“Ultimately we have to do what is best for our family regardless of what others think we should do,” she says.

It's OK to break the 'rules'

Some parents find they have to put a new spin on their holiday traditions in order to make the time more comfortable for their special needs child. It’s OK to relax your expectations of what the holidays should be and focus on creating happy memories in whatever way is best for your family.

“I think it’s important for parents to be respectful of their child’s need to experience the holiday in the way that works best for them, even if it’s not the ‘textbook’ way the holiday is supposed to look,” says Elizabeth Welch Johnson, whose son Chris has Asperger’s Syndrome.

“When he was young, the chaos of five family members all opening presents at the same time, crumpling wrapping paper and exclaiming over their presents was just too much for him,” she said. “He would open one present, explore it, examine it and then stop. Pushing him to open one more present just pushed him into a tantrum. We finally figured out he would open them all eventually on his own terms. We were the ones in the hurry to see his reaction to what Santa brought, but that wasn’t respectful of his needs. Sometimes it took a day to open all his gifts — one year it took three days.”

One challenge that both Roberts and Johnson face involves dealing with extended family members who have a set idea of how kids are supposed to behave at the holidays.

“It’s gotten better over the years as we have become more confident in telling family members what we can and can’t do,” says Roberts, “but it is still stressful dealing with family members who choose to only be a part of our lives once or twice a year and who aren’t willing to bend their traditions or expectations.”

Johnson says she has encouraged her son to see a quiet space when holiday sights and smells become overwhelming.

“While grandparents and friends might expect kids to be on display and present for all of the holiday events, we gave Chris permission to retreat to his room whenever he felt things were getting too much for him,” she says. “It’s far better to have him retreat while he was still in control than have to drag him away in the midst of a major meltdown because we forced him to join in.”